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  1. 2 points
    My DS is now 17 and applying to colleges, never thought we'd see that day. Like BOBH mentioned my DS reacted to Vit D and O3's like we had given him LSD. Super scary. But he was a paradoxical reactor as so many PANS kids are. He also was super sensi to Probiotics but I vetted the ones he took like no-tomorrow and keep copious notes on how he reacted to everything. He's the full meal deal - PANDAS Plus who never stopped flaring once he started for almost 4 years, missed almost 4 full years of any type of school he was so impacted, and was also diagnosed with Lyme and POTS. I think he was on Abx for over 4 years straight. Game changers for him were getting the Strep out (took over 6 months and a tonsillectomy) at the beginning of his illness, then 2 years later him getting Plasmapheresis (TY Dr. L), and now for the past year HBOT has been UNBELIEVABLE for Lyme symptoms, so we now have one of our own. Look into hyperbaric oxygen therapy for Lyme... My boy was almost 12 when he crashed, IVIg didn't help at all, Abx kept him from getting Strep again but didn't help him stop flaring, ibuprofen took the teeny tiniest edge off him and he took 3 caps every 4 hours for 12-18 months if not longer. PEX was huge for us, although he got worse before better, but we got the suicidal depression and schizophrenic crazy gone and our boys mind back as a result of it. He's 17 now talking about perusing an engineering degree. Dec 11th as the 6th year anniversary of his crash. It's like a bad dream we are waking up from finally, thank gosh. I sincerely hope your boy gets well soon.
  2. 2 points
    The obvious approach is to say exactly what you wrote: that you believe your son may be having neurological inflammation because of an autoimmune response based on a list of symptoms that you have documented. Then see what tests he suggests and allow him to make the diagnosis. Remember that there is an art and science to using the terminology that will ensure that your child gets the treatment needed that will also be covered by insurance. I was careful to allow each doctor to use "PANDAS" before I did. If they did not, then I didn't either. After all, a bruise is also called a contusion ;-).
  3. 2 points
    dreamingpanda

    Recovery Time

    I agree that everyone is different. So much depends on how old a person is, how severe, how long it's been untreated, and what kind of treatment they get. And sometimes, there seems to be no rhyme or reason to how fast or slow one person recovers. In my experience, I was untreated for eight years, had my first IVIG at 19, and after another IVIG and a tonsillectomy, I'd say I made a full recovery over a year later. I've since relapsed twice, but that's because I caught Lyme disease, which complicates things a great deal. From what I've observed in my own journey, it's very hard to give an accurate percentage of recovery, or to figure out when I've gotten all the way back to myself. I don't know if I've ever been 100% symptom-free since I became ill eleven years ago. I've stopped trying to assign a number to where I am in recovery, and I just gauge whether or not I'm able to live my life as I wish. Ultimately, I think that's the best a lot of us can do. For me, there's never been a day or even a month when I've suddenly realized everything was back to how it was before. It usually seems to be a painfully slow process where I shed symptoms and regain my "self" so slowly that I might not even realize it's happening. It's easy to over-analyze ever day, every tic, and every little compulsion, but the overall trajectory is what's most important. There will be ups and downs and flares for pretty much everyone, but hopefully, the underlying trend is towards the positive. At my age and given how long this went untreated, it's possible I'll always have some minor symptoms. But even if this is so, thanks to treatment, PANS hasn't stopped me from doing anything I've wanted to accomplish in my life. So hang in there! You might be in this for the long haul, and there may be a lot of ups and downs, but yes, your daughter can and will get better with the right treatment.
  4. 1 point
    MomWithOCDSon

    School

    My DS was older than yours by the time his PANDAS was such that it really made school an issue, but I can certainly relate to what you're currently experiencing as my DS first got a "regular OCD" diagnosis at the age of 6, just a few months into his first grade year. Do you have a therapist involved in your DS's overall treatment plan at this point? Obviously, we had one because we couldn't get anyone to sign on to PANDAS at the time, let alone treat it, but he was a good resource for in-school and at-home strategies for addressing our DS's OCD (mostly perfectionism, which led to either over-erasing or avoiding writing down anything at all, for fear he would get it "wrong" somehow) and attentiveness issues. Mostly, at the time, we made appointments with DS's teacher(s) and the school psychologist (maybe social worker, too, if there is one), gave them some material about his behaviors and what they might see (you could add "during a flare"), and any suggestions we might have for accommodating him reasonably in the standard classroom but not at the expense or disruption of the other students. It appears your teacher is doing that with her timer tactic, though you may be right that it might increase his anxiety and, ultimately, he may still fail to "cooperate" because that OCD fear of doing something wrong will typically outweigh the fear of displeasing the teacher, in our experience, anyway. It would probably be helpful to get the school psychologist and/or social worker involved, if possible, because they can help the teacher with appropriate strategies in the classroom, too; yours is likely not the first kid who needs some accommodations that they've come across, with or without a PANDAS diagnosis. They might wind up suggesting a 504 Plan which would be something to consider. I would also suggest the book "Students with OCD: A Handbook for School Personnel," by Gail B. Adams, ED.D. I bought copies for myself and for my DS's administrator and psychologist when it first came out. In remembering that the school is not equipped to "treat" PANDAS or OCD, but that their goal is to give your kid the best education possible, before, during and after illness or a flare, giving them tools to meet the primary behavior set in the school setting, IMHO, is really all that we can ask of these folks. The ideas and suggested accommodations in this book are really, really helpful, in our experience. And because they come from a "third party," we didn't get a lot of pushback as though we were advocating for something that was inappropriately lenient or anything. In the end, it might be that your DS needs to have auditory assessments, rather than written ones, during a flare so that he's not required to write things down on paper for a period. He might need some alternative assignments, depending on what's at hand; for instance, my DS HATED "coloring" as his small motor skills were never up to par when he was sick and that messed with his perfectionism (staying within lines), plus, he quite honestly thought that the very act of "coloring" was a waste of his time; some kids love it, he hated it. So the teacher came up with some other options for him that were more "spatial" and less triggering for him. We were also able to get them to eliminate some of the "busy work" -- tasks and/or assignments of nominal value that were more "crowd control" and "quiet time" undertakings than they were teaching of basic concepts. So, in other words, if he could demonstrate his mastery of the math by doing 5 problems instead of 10 (many of which were repetitious), then he was awarded grading in accordance with the reduced quantity of problems he was assigned. Good luck to you!
  5. 1 point
    bobh

    Caught in a Loop

    I agree with MomWithOCDSon that ERP when in the worst of PANS/PANDAS symptoms not only doesn't work, but is counter-productive. It certainly has helped some people with OCD, so it might still be helpful when he is not as anxious - but that is not when you need the help the most. I am also sure that some ERP practioners will disagree with this kind of advice and point to very severe cases that they have helped. But, they might be different if they don't have the PANS/PANDAS trigger.
  6. 1 point
    MomWithOCDSon

    Recovery Time

    I'll offer that the younger the child and the quicker the proper diagnosis and treatment, the quicker the recovery. At least, that's my long-term impression from participating here and other support groups/forums over the last several years. Conversely, in kids who go longer without the "catch" and/or are older by the time PANDAs treatment is made available, the harder it is for them to "snap back." Kind of like a rubber band; newer, tighter ones tend to snap back to their original shape, even if they get stretched out a few times. But older ones lose some of their elasticity over time and can even become brittle so, like bobh said, they might only come back to 90% of their original size/shape or, in the most unfortunate/complex cases, they might even become brittle enough to break. But even with what may appear to be a full or nearly full recovery, I do think you will want to remain mindful and vigilant for subsequent flares. More often than not, they're part of the package for a kid who's immune system is predisposed to dysfunction. Employing prophylactic measures should prevent those from becoming full-on "episodes," but they don't always fully offset the new immune injury. Good luck!
  7. 1 point
    bobh

    Muscle Twitches?

    Sounds (from this distance) like tics. My son had plenty of weird (choreiform) movements, but no real tics (in my opinion). Can you find a PANDAS/PANS expert in your area? There is a list here: http://www.pandasnetwork.org/research-resources/us-providers/ Even if the symptoms seem tolerable now, I would (if doing it again) start down this road of getting a specialist lined up right away, rather than wait and second-guess.
  8. 1 point
    For what its worth, I developed hyperaccussis--extreme sound sensitivity which responded to Aleve at prescription doses for 5-10 days or so to get it to calm down and if it starts to act up again, I go back on the aleve (naproxen sodium).
  9. 1 point
    We also got slightly worse on probiotics (well tested, on and off many times), and suspected worse on NAC (just from one try). You might try cutting some of the supplements out one by one and see any of them are a problem. Interactions can also get really complicated when there are so many pills.
  10. 1 point
    Zith and mino are known to be ototoxic (can increase hearing sensitivity issues). Have they helped the other pans symptoms? Maybe try an increase in NAC? A separate issue, but D3 makes my panda worse, so we don't use that.
  11. 1 point
    bobh

    This is what I struggle with....

    Unfortunately, there is no clear definitive biomarker for PANDAS, so blood results are just a guideline. Our son was also always a bit more anxious that our other kids, but we got a PANS diagnosis primarily because of an extreme ramp up of OCD symptoms after some (unknown) flu-like sickness when he was 9. He actually had a bout of severe OCD at 6, that mostly went away months later. We wish we had been tuned into PANDAS/PANS back then (because if caught early, it should be better), but we didn't learn until he was 9. So, you are in better shape than we are. If unsure, Dr. T. might weigh the risk of giving him longer-than-normal trial of abx vs. having PANDAS untreated. Catching this early is a good thing. Having gone through all that we have, I would be more anxious about untreated PANDAS than about wasting the time and money you have spent on a possible dead end.
  12. 1 point
    MomWithOCDSon

    what is next best anti-inflammatory?

    We never tried dao histamine blocker, but I can speak in the affirmative with regard to quercitin; really seems to help with really no side effects at all. In fact, DS and I both had been taking it for years (DS is a junior in college now), and when I ran out a few months ago and DS was away at school, I decided to just let it go and stop taking it. After my mold allergy started ramping up, however, and I couldn't get relief from Zyrtec or any other typical OTC measure, I went back to taking quercitin, and within about a week, I had significant relief. Great stuff! We like the "QBC Complex" from SolaRay as it also has Vitamin C and bromelaine, along with the quercitin.
  13. 1 point
    Sheila

    Does this look like a tic?

    Hi lbass, I apologize that I just noticed your post. Welcome to the Forums. I think it is very good that you planned to see a pediatric neurologist. Can you please tell us how that appointment turned out? What was the advice? The motions in the video are not typical tics but we are not qualified to judge what type of issue it may be caused by. Sometimes kids do an exaggerated motion to cover up a tic. Again, it is hard to know what is going on from the video. We are interested in learning more and knowing how your son is doing. Please do let us know.
  14. 1 point
    SurfMom

    Has anyone dealt with Catatonia?

    Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help: Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed), 9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including high DNase titers, etc. If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery. You are more than welcome to PM me.
  15. 1 point
    gladiator16

    Does this look like a tic?

    I think it looks like a tic . My son has that sort of movement sometimes . Ive counted 10 different movements that my boy does all of which are slightly different . I hope I'm wrong xxx
  16. 1 point
    jan251

    Most Effectives Treatments for PANS/PANDAS

    Daptomycin, mentioned in that second link, is an IV abx. Dapsone is the oral version. My understanding is that Horowitz has been treating lyme patients with oral Dapsone for a couple of years, in combination with high dose folic acid (the study says folic acid was used for the purpose of mitigating the small risk of potentially very dangerous side effects of Dapsone, but on his FB page he says it was, indeed, methylfolate, i.e. natural folate rather than synthetic folic acid). He has a paper on it. https://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=7159 From the anecdotes I've read, like anything else, it helps some and not others. Personally, I'm very interested in the anti-inflammatory and immune modulatory effects of Dapsone in addition to its antibiotic qualities. For a lyme angle, there is an interesting discussion here http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/136190
  17. 1 point
    Hi, My daughter is being treated by Kayleen and we like her very much. Feel free to pm me if you have specific questions. Heather


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